Alien Evacuation Day is here!

From my humble position , you have endured it well but bodies need to rest and heal . Inflammation needs to settle . My mum would tell you to listen to your body and follow its pace till your over this . 

Then give it all you have once your through the other side .

take care ,

Court 

Hi Strongsami

So sorry you are feeling it right now I can't give you much advise as I've not yet had my op, you have always been an inspiration with your positivity but you need feel sorry for yourself at times. Your body needs to heal and so does your mind . I have had plenty of meltdowns at just the thought of the op!  I think the others as always have given great advise just take one step at a time and you will get there

Lots of love Peacock62 xxx 

Awww thank you for your lovely message,

I love the name Sooty by the way!

You are absolutely right and I have a habit of beating myself up over certain things which are totally normal.

Yesterday we changed the wafer at a better - less productive time and it went a lot better. This time I didn't use the powder or the spray and after having read in the other group and some other advice from other sources, I just put sudocrem on. So far so good... I emailed the stoma nurse just to check - also to check if it's ok to change every day, she hasn't got back to me yet.

You are also right about lower impact exercise. I went to my GP yesterday and she has referred me to a neurologist as even thought there is a slight improvement to the leg function, there are some clear issues. She also had a feel of my tummy and the scars and she said there seemed to be a bit of a build up (nothing major) so she has prescribed me a medicine which is a specifically targeted anti inflammatory which deals with post operative soft tissue build up so that should help things too.

I know 3 weeks is still early, I am terribly impatient being such an active person but you are quite right and I have noticed that the last 2 days where I have not moved that much, I have felt better... guess there's a lesson there ;)

So yesterday the hospital also contacted me for my sigmoidoscopy appointment and it looks like I could have the reversal in the next 2-3 weeks! (they are a bit different here, they want me to have the reversal before I start mop up chemo). 

Temperature has been ok thankfully so that's good.

Thanks again for your support.

Sxx

Thank you so much for your lovely message.

Great advice re: the stoma stuff - I tried sudocrem yesterday after having read about it on the other group and got some advice from another member... fingers crossed. I have updated the stoma nurse too so let's see what she says.

As you said regarding your hot chocolate experience (!) I think everyone has had those moments right when they cry and get down and at the end of the day it's down right freaky having to deal with this new "extension" to the body.

When I see people for the first time since the op I'm like "I have had one thing removed and another one added" ;)

Thanks again xox

Thank you so much process

Lovely words as always - yes you are right, Little Miss Positive is just having a bit of a rest, she will be back when she's ready to fight ;)

All the best

xxx

Thank you so much court

and you are absolutely right, I just need to chill out for now.

Thanks again

Sxxx

Hello Peacock62

That's so nice to read that I have inspired someone! I think everyone on this forum is just awesome.

You are so right, meltdowns are both normal and actually necessary. Another forumite told me "have big cries" and I think this is really excellent advice.

Hope you're doing well too, btw the op will be fine, I still can't believe 3 weeks have already passed since mine and I was so nervous about it and literally for me it was: joking with the anesthetist to waking up and it was all done ;) 

Massive hugs

xx

Strongsami

I'm so sorry to hear that you are having a rough time just now, just when thought you would be seeing an improvement to your lifestyle but instead you needed to have a good old rant and I hope it helped a little to get everything off your chest to people who actually listen to what you are saying and will try to help you if they can, and whilst I am talking about your rant please be assured that you do not ever need to apologise for ranting and raving this is very safe place to do it and not one member will judge you but they will have empathy towards you and you know that you can come along at anytime and let off steam when you feel the need to, we all do it at sometime.

Now to your problems 1, 2, & 4 I can only make a little contribution as to why you are having so many pains and your brain is playing up and I can only hazard a guess at this by saying to remember that you've had really major surgery and you  body has undergone a bit of a battering when the surgeon was doing his work resulting all parts of your innards have been pushed, pulled and had a bit of handling and the pains you are feeling is just your body settling down and getting back in the right place. With regard to your brain issues you could still be experiencing.strange feelings due to anaesthetic still working away inside your body and perhaps you had some really strong painkillers whilst you were hospital and as these effects wear off you'll maybe start to feel a bit better as your brain starts to clear.

Problem no 3 I'm sorry that your skin has broken down around your stoma, this can be caused by a number of things like having to change the pouch baseplate often, having leakages, moisture under the flange, base plate not cut to the correct size or the wrong pouch for you all very small points on there own but collectively amounts to a major problem so we need to solve the problem quite quickly more you.

First let's start with cutting of the hole, it should be cut so that it is close to your stoma but not actually touching.

The skin should be perfectly dry when you apply the base plate but preferably the skin should be tacky.

To help the skin become tacky you need a good barrier film all round the stoma and peristomal skin. Which one do you use.

Has your stoma care nurse suggested moulding a seal/washer round your stoma before attaching your pouch.

Words on the use of powder, this should be used sparingly and be totally removed before the pouch is applied. To get rid of the excess powder use a small brush to remove it. If you skin has broken down gently massage the powder into the wound and as the powder and anything seeping out of the skin mix together and l forms a paste and crust which should help with healing of the skin, any excess powder should be removed.

With so many different pouches available and all manufacture including some products into adhesive such as Manuka Honey or Aloe Vera and making flanges so different soft, flexible, flat, convex and So on.

I'd like to suggest that you contact other pouch manufacturers and obtain sample pouches from them to try out to see if you get any improvement to your skin.

How often do you have to change your pouch and do use a 1 piece or a 2 piece system.

Paste as Nicky mentioned can help and it depends if you would prefer stingy alcohol or alcohol free paste. I use Convatec Stomahesive paste which occasionally stings.

I am also sorry to hear that decided to misbehave during a change, nothing worse that having your skin all nice and clean when Cliff starts to make himself known and spurts all over the place and it's back to square one. I've started to lay a piece of polythene over my upper legs to catch any run away output I also put plenty of disposable chair pads all around me and on the floor to catch anything that escapes. In an ideal world we would be able to take an old pouch off clean up the skin and leave it to enjoy the air circulating around it, unfortunately we can't manage it every time.

Please keep talking to me and I'll be on hand either here or in the Ileostomy, colostomy, urostomy and any other stoma support group and we'll get this problem sorted very sorted.

And by the way Mrs Positive is only having a short break and she'll soon be back to give you back your positive outlook.

If you need help contacting pouch manufacturers or anyone else give me a shout and I'll get all the information you need to get things moving.

In any message you shout out to me start the message by typing @The BODACH when a little blue box appears with The BODACH and a signpost to the left click on it to insert my tag into the message and I will be alerted just as you have been with this message.

Please remember I am here to help troubleshooting any problems you have at anytime you don't have to suffer in silence

Ian

Hi,

I just thought that I might make a suggestion re dealing with the sore skin around the stoma.

It is something that I ran across online, and so by no means validated by "traditional medical guidance".

I have what my nurse called "porcelain skin" (guess that's easy to interpret, no?).

For he first while after I was released from hospital,the skin under (and around) my wafer was vert red, itchy and inflamed.

It was getting progressively sorer, so I asked for help in dealing with that.

The nurse informed me that I could use a light amount of spray from a puffer meant for asthma sufferers.

I have to admit, it did work in reducing the symptoms, but I was uncomfortable in using it on a regular basis. (I am not sure, but I suspect that it may contain steroids or other medications that should not be used over extended periods unless absolutely necessary).

That being the case , I started researching the problem online and came across a YouTube video of a young female ostomite who had been dealing with her appliance changes for a long time.

She also had suffered from problem skin such as what I see and hear about in this forum.

She said that what had worked for her was to totally avoid adhesive removers. Instead, she uses essential oils (she mentioned diluted lemon oil as the most effective, since she said that it tends to "melt plastics". I have to emphasize that the essential oil HAS to be diluted. I suggest a 1 to 1 ratio of lemon oil to jojoba oil). After the appliance has been removed, she washes the skin thoroughly with unscented soap (she uses Ivory) and then dries it before putting on the next appliance. She uses no powders or barrier spray or wipes, nor any barrier rings or stoma paste. I suppose the ingredients in these products might be irritants as well, but many of us really need to use them for maximum effectiveness of our appliances.

I decided that the avoidance of adhesive removers might be a good idea for myself, so I decided to give it a try.

The results have been excellent. As I said, I ordered some essential oil of lemon, as well as pure jojoba oil.I also ordered small bottles with roller tops from Amazon. I put the 1/2 strength oil into a bottle. I roll the oil around the wafer and gradually work it under with my fingers.

After the appliance comes off, I wash the skin with the soap, rinse and dry. I would note that I don't allow any product other than the water onto "Sheila" (named after the GPS voice that annoyed me so much years ago that I would often find myself saying: "Oh, SHUT up Sheila!!!       I often tell this Sheila to  "Shut UP! "  as well. ; )

I do still use stoma powder and barrier spray as need arises but, overall, my skin is doing much better with this as my regular routine.

Also, I should mention, I changed from a two piece to a one piece appliance as I found that the flexibility of the flange is  more comfortable and less irritating. I change my appliance about every fourth day as by then I tend to see some redness building up under the plastic. Once it's changed, all is fine again.

I hope that this might give you some help in trying to cope with a couple of the issues you are dealing with.

Also, regarding the post surgical pain, when I mentioned it to my brother in law ( a doctor), he told me:

" Well, of course you are going to have pain! The surgeons literally scooped up your bowels, cut through them, then pushed them back into place!" (He is a dear , but subtlety was never his forte).

For me, the pain was there for about three weeks, lessening as time went on.

BTW> congrats on getting the alien out. I only wish I could do the same.

Thank you so much for your lovely lovely reply.

You are so right about the major surgery thing and it's easy to forget sometimes because in some ways I feel "normal" and it's just frustrating that my body is limiting me from doing my normal everyday things but absolutely, it's only 3.5 weeks since which is still relatively early to start doing everything again.

I have an appointment to see a neurologist tomorrow and I can't wait to start sorting out this problem with the nerves in my leg.

As for the stoma issues you mentioned, I think the main problem is not cutting the base plate well enough coupled with sensitive skin (on a good day lol) and possibly leaving too much powder on so it doesn't;t stick well afterwards.

So my hubby is back and back to cutting the base plate and he's definitely doing a better job than I was on my own so hopefully things should improve there. Second, I saw what you said about removing the excess powder which we didn't do the first few times. And I also read about that procedure you mentioned "crusting". A lot of people have mentioned they get on better with a one piece... I wonder whether I would too? Today I have an appointment with the stoma nurse so hopefully she will shed some light on this too.

I have the CAvilon barrier spray - I am in Italy but I think it's an international product. I use Dansac bags and plates (the hospital sent me away with 3 boxes of each).

I also have Stomahesive powder. The hospital told me to change the base plate every 3 days and the bag once a day but since the problems I have been changing the base plate every day...

Will be interested to see what the stoma nurse has to say about it all.

Thanks so much for taking the time to write such a lovely, informative post.

xx